100% Fatal

Back in the dark ages when I took Psych 101 I recall studying psychiatrist Elisabeth Kübler-Ross’s theory about grief.  She suggested there were a series of five emotional stages that a person who experiences a life-threatening or life-altering event goes through. The five stages are denial, anger, bargaining, depression and acceptance. Not everyone will experience all five of the responses and they can occur in any order. But for the sake of argument lets start at the top. Denial: No, not really. I may not have greeted it with open arms, but I was able to connect the dots of several, seemingly unrelated symptoms the moment the diagnosis was suggested. Anger: What’s the point. Even when I am pissed off no one can hear me. Bargaining: Yes I did indulge a little here. I made a donation to the ALS Association thinking perhaps what I gave for the Ice Bucket Challenge wasn’t enough. Right after sending in my donation I got a thank you email. It read:

“We estimate that 15,000 – 25,000 Americans live with ALS at any given time. When you compare that number to other diseases, it seems rare. But, consider this – because ALS is 100% fatal, people living with the disease are not with us long enough for that number to increase.”

It was a tad jarring to the zen of my morning cuppa to say the least. 100% fatal. Now, I’m not a mathematician or anything but from where I stand that strikes me as a whole shit ton of fatal. You could argue that life is 100% fatal. And you’d be right of course but, as I have alluded to before, you can hide from that type of fatal for the first 5 or 6 decades of your life without too much effort. So what was the next stage? Depression, I think. Well crap, who has time for that? The email helped snap me out of whatever malaise I might have wanted to indulge in and get on with the time we had. With the term “100% fatal” bouncing around my brain I went to a campus store with my sister Lynn and had a t-shirt made. Sometimes you need to be handled with kid gloves and sometimes you just need a smack up side the head with a dose of über reality.

The shirt says it all

Three weeks from today, if all goes according to plan, we’ll be camped in the mountains east of San Diego. Question of the hour: Are you getting nervous now that the ride is getting so close? Yes and no. Six months ago I was apprehensive about my body’s ability to hold out. Who knew where I would be in terms of functionality. But here we are three weeks from departure date and I can still pop off 100 miles. So the closer it gets the more relaxed I become. It’s almost here and I can still ride. Yesterday we averaged 17.7 mph for the 105 mile round trip. And only fell off the bike once. Although I also fell off last time I rode too. My left hand doesn’t hold on to anything. It just rests on the handlebars. Both accidents were related to unanticipated roughness in the road and my hand lost contact with the bike. As I see the bike bouncing out of control underneath me (in slow motion no less) I just try to turn the wheel to the left so my good side, where I still have a little muscle for padding, hits the road first. This goes against every grain of biking sensibility I have. Everyone knows you turn to the right so the impact doesn’t damage your gears and shifters. However, with regards to falling the correct way both falls were resounding successes (although my right shoulder, elbow, hip and knee may beg to differ). The last couple of rides I’ve been joined by Ira who along with his wife Lynny will be be joining us on the trip. I’ve known Lynny and Ira approximately forever. Rae has known them even longer. Ira has a talent for concisely, eloquently and matter-of-factly summarizing all he sees. “That’s one fall per 100 miles you’re averaging” he said as we rode on after the most recent spill. On the plus side I have 3,000 miles to perfect my technique. But also, unless we can fix this, I’m going to leave quite a chunk of my hide on the asphalt between California and Florida.

I met with the team of engineering students to try on some prototypes of hand, wrist and neck supports. These are some of the prototypes they have developed so far.

IMG_7865 IMG_7871

This is who I channel when wearing it.


Thank you Hong, Carl, Sharon and AJay. My  shoulder, elbow, hip, knee and wife thank you for your continued efforts. During the meeting a deep cut on my elbow kept oozing. I assured them that next time we met I would try my best not to be covered in blood.

I’m told I have a disease that is 100% fatal. That being said there is risk inherent in walking out the front door in the morning. ALS is a terrible thing, yes. I’m not going to pretend it’s not but along with it come some blessing.  I have talked much of  the “fuck it” list and doing things you’ve always wanted to do. The general association is with these types of lists are epic endeavors and challenging feats. But life is a web held together by uncountable fine strands. And the breaking of even the most seemingly irrelevant of these threads can cause the whole thing to unravel. I have been given the opportunity to do some things. But also to not leave things unsaid. Sometimes the finest of threads can be the only thing holding a person to the ledge. And sometimes all a person needs is to know is that you care in order to keep going.  All it takes is a call, a text, a few words to the person sitting or lying next to you. Sometimes it’s not your fault you can’t find the right time. The person you want to talk to can be distracted. Maybe it’s their morning to be an arsehole, maybe they are absorbed by yet another damn cat video on YouTube. You tell yourself now just isn’t the time to say what’s on your mind. You tell yourself there will be a better time. But as Janis once said “Tomorrow never happens. It’s all the same fucking day man.” Tomorrow has a knack for becoming the day after tomorrow, the week after next, the year after never. Now is the time if for no other reason than you did your part. Don’t leave things unsaid. Now is the time.


Since being diagnosed we have been connected with a lot of resources. Resources we didn’t even know existed until we needed them but are very thankful they exist. We see the ride as an opportunity to give back to those who have helped us. To give back while we can, and hopefully to raise a little awareness about ALS along the way. People say they admire how we’re facing this. But none of us really know how we’ll face a situation until actually confronted with it. It’s easy to face a challenge head on when you have an incredibly supportive group of friends and family standing beside you. I am going on a little ride. The ride even bears my name. But it’s not my ride. There are a number of people taking a significant chunk of time out of their lives to join us. Ian, Luci, Lynny, Ira, Daniel, Andi–it’s their ride. For everyone who has gone through this or will go through this. For everyone who has watched or cared for a loved one as they have gone through this. This is their ride too.IMG_7639Ray

Click here to Donate and support the Muscular Dystrophy Association and research on ALS

17 thoughts on “100% Fatal

  1. Beautiful…I love how you are really making me evaluate my tomorrow’s ray…my family an friends are wondering why I am being so nice..Lol..thank you.


  2. I’m interested in your left hand/wrist/arm support. Will you velcro strap your forearm or wrist to the bike? Looks like you have a forearm support to lean on.


  3. Ray, I am sitting beside my brother Michael, also your brother in ALS, in his power chair. He writes on his phone using his left thumb. You might be interested in his blog, innovationlifelove.org, and his poem, Not Dead Yet. He wanted me to share a concern regarding excess strain, using so much of your finite physical resources, and the risk of head injury in case of inevitable falls. He recommends something you have probably considered, Plan B, lag wagon. If you and Rae are interested, I will share our family’s experiences with your family, when I am back in Champaign.


    • Hi Michael. So you’re a fan of Monty Python too. Yes we have the SAG wagon along for the ride. Surprisingly my head is about the only thing I haven’t hurt yet. Going to do my best to ride within certain limits. Thanks for your thoughts and concern.


    • Ray, nbolero is a friend of mine and forwarded a link to your blog. I used to live in Urbana and heard so much about “Ray & Rae” but don’t think I ever met you. Glad Nbolero gave me your link so now I can virtually follow you on your ride, plus this post reminds me to pick up the phone and tell nbolero how much she means to me. Keep riding and keep writing.


  4. Taking the time to share…thanks for your update and honest feelings post. I have always admired you for becoming a nurse midwife when males were the minority in nursing and male midwives almost unheard of. Over the years whenever your name was mentioned by either staff or patients it was followed by a positive remark. You are respected and loved more than you know.


  5. There is a lot of stuff on the internet. This may be the best thing I’ve ever read on it. Thank you so much for sharing. Maaike (born 12 years ago, delivered by you, the first human she felt and saw “on the outside”) and I are thinking of you, especially during the Ride.


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